Leaves are starting to fall off the yellow poplar in the back yard, a tree I love for its huge waxy-plastic seeming flowers and the wide tulip-shaped leaves. The season is starting to turn gently, the weather still summerly but the yellowing leaves around the neighborhood serving as a reminder that school starts next week and life returns to that normal cycle. Except that it doesn’t, not for us. We are currently on a decision making hold, but the cascade of events that will follow looms ahead heavily. Continue reading Autumn’s Arrival
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Plans and Perseveration
Saturday morning was a lazy one, but I determined to hit the loop inside of St. Jude’s campus before it got too hot for this Yankee girl to even consider it. The sun was already insistently warm before 9 am, but I figured I had enough time to squeak in a reasonable run before it became unbearable to my delicate constitution. The previous 24 hours had been full and draining, leaving me an exhausted heap curled around Colin in the blessedly comfortable bed at St. Jude’s Tri Delta House on Friday night. He had asked me to snuggle with him and I happily obliged, but in the morning I woke up still wearing Friday’s clothes. Continue reading Plans and Perseveration
Declaration and Decisions
Going into surgery, we knew that we would learn valuable information that would drive treatment decisions. The surgery itself promised to be rather ho-hum, endoscopically performed through either one or two holes, and resulting in a very modest recovery time. The anxiety wasn’t about the procedure itself but the findings. Continue reading Declaration and Decisions
Memphis Sunrise
The day before neurosurgery is a frustrating combination of interminable waiting punctuated by the frantic urgency to act, all conducted without benefit of even the vaguest structure. It stands in sharp contrast to the dense scheduling of one of our typical days at St. Jude, spent shuttling from one meticulously scheduled slot to another (minus E Clinic, the clinic for brain tumor patients, which is beholden to no clock born of human devising), and it is endemic of the inpatient environment we have encountered at any hospital. Already in the system, it is a simple matter to add another test or procedure through hidden incantations conducted in the obscurity of the famed work room. However, this comes with a price; upon admission, the patient becomes the sworn legal property of the hospital and therefore liege to its whims of timing. Continue reading Memphis Sunrise
Progress(ion) Report
I realized, after finishing the last very long post, that I didn’t actually go into my originally planned description of the Augusta trip. However, I began writing it in the days leading up to the second on-treatment scan. In the gap between working on it furiously on the plane en route to Memphis and being able to return to it, the scan itself took place. With a lot of anxiety around this milestone, Dr. Gajjar was quite careful in showing me two areas on the spine that might be of potential concern and that he had brought up with the radiologists. These were nothing worrisome, one being clearly a blood vessel (even to me), but he wanted to make sure I saw them before I went on my merry way. With some relief, we started disseminating the news of the all-clear and Colin and I returned to the Tri Delta House to relax before dinner with friends. However, the phone rang in our room and I was met with the familiar voice of Katie, a nurse who had taken care of Colin often when he had inpatient and now works in the brain tumor clinic. We needed to return to the hospital, which meant only one thing.
Continue reading Progress(ion) Report
Colin’s Immunotherapy Treatment
Yet again, I have let too much time lapse between updates on Colin. This time, the reasons are driven externally more than internally. In the quest for an appropriate post-surgical treatment, we discovered a novel option in Augusta, GA, that provided Colin with the elusive combination of a good quality of life and the possibility of durable remission. Although there will soon be a trial open for children with relapsed high-grade brain tumors, Colin is the first child to get on this therapy and is being treated under compassionate use with the FDA. Continue reading Colin’s Immunotherapy Treatment
Homeward Bound
Tomorrow morning, Colin and I return to Ithaca. A follow-up MRI today showed no residual tumor or suspicious areas: our first honest-to-goodness gross total resection.
His recovery has been nothing short of astounding. After walking out of the ICU 24 hours after entering it, they were ready to discharge him except he needed to start a medicine to prevent clots while in the hospital.
Post-Op Update
The wait on surgeries is a notorious combination of boredom and anxiety, though Dr. Boop significantly diminished the latter with his early morning announcement that the procedure would be much simpler than planned. Fortified with snacks and ample access to the internet, we were prepared for the long haul, but only an hour after we got the call that they had opened we got another call that Dr. Boop was scrubbing out and ready to talk to us.
Continue reading Post-Op Update
Surgery Today
Last night’s intention to post an update on Colin evaporated when I snuggled with him in his hospital bed as he watched a movie. I was out like a light and he wouldn’t go to sleep. At some point, I managed to sweep food crumbs off the sheets and he did eventually fall asleep; with four straight nights where he can’t eat anything the next morning because of one procedure or another, who am I to begrudge him an evening of partying? Continue reading Surgery Today
More Good Bad Luck
These past few years, we have done a poor job in updating on Colin and his progress. Though I can’t completely escape guilt on this point, I am happy to report that the reason is that we have all been busy with normal life and that he has been improving steadily. We moved to Ithaca, the boys have been going to the same elementary school together, and we all enjoy living in a neighborhood that is full of kids and friends.